Posted on April 17, 2020
February, I asked Dr. E Fuller Torrey for a testimonial for my soon-to-be-released book about my son’s mental illness (Fix What You Can: Schizophrenia and a Lawmaker’s Fight for Her Son). Dr. Torrey signed his response letter “Fuller,” thrilling me more than a hand-signed letter I once received from a President I admired.
He wrote the first book I read after my son was diagnosed with schizophrenia. It was aptly titled Surviving Schizophrenia. Back in 1999, I wasn’t sure our family would survive. I gobbled up the book. Dr. Torrey spoke to me. Not only was he a nationally-respected research psychiatrist studying schizophrenia and bipolar disorder, he had a sister with the disease. He knew. He didn’t judge. Using clear, tight language, he provided facts I needed to know. His cogent advice was about such things as problems likely to arise, commonly asked questions and advocacy organizations. Best of all, his words assured me I hadn’t caused Jim’s mental illness. These are brain diseases, he said. Old theories I had been taught in college about mental illness being the fault of cold mothers had been completely discredited. Words I needed to hear.
Treatment Advocacy Center
While he worked at a Washington, D.C. clinic for homeless people with severe mental illness, Dr. Torrey developed a conviction that “until we find the causes and definitive treatments for schizophrenia and bipolar disorder, we have an obligation to try to improve the lives of those who are suffering.” The year before Jim was diagnosed, he founded the Treatment Advocacy Center (TAC), an organization which supports research on schizophrenia and bipolar disorder. Unlike virtually every other mental health advocacy organization, it does not accept funding from drug companies, instead relying solely on individual donors. After consulting with other experts in the mental health and legal fields, Dr. Torrey concluded that a concentrated effort was needed to reform state civil commitment laws so that decompensating individuals with severe mental illness received treatment before they became dangerous, homeless, incarcerated or victimized.
I welcomed assistance from TAC back then, when I first introduced mental health legislation in the Minnesota legislature. After our son Jim was diagnosed, I saw the problems with civil commitment laws as clearly as Dr. Torrey did. Minnesota was one of the first states to work with TAC.
A few years later, I was thrilled to hear Dr. Torrey speak at the National Alliance on Mental Illness (NAMI) convention. His session was packed. When he was introduced, the audience applauded as wildly as if he were a rock star. I joined in: I thought he was a hero, too. A slim man with a trim beard, he walked to the podium with an assured manner. He spoke with moral authority, filling the convention hall with stern words about how the mental health system needed to shape up. He blistered mental health researchers for ignoring the needs of people with serious mental illness. My heart beat faster, with hope.
He was mobbed afterward. After a long wait, I, too, got to shake his hand and thank him. After I said my name, he knew I was the Minnesota legislator who had worked with TAC.
In the two decades since, I’ve read other books by Dr. Torrey. Two more editions of Surviving Schizophrenia have been published,the seventh in 2019. He has authored 20 books all together, not counting multiple editions.
Today, the Treatment Advocacy Center has broadened its mission. It now serves as the watchdog for and champion of research and expanded treatment options for people with serious mental illness. TAC champions Assisted Outpatient Treatment (AOT) and publishes evidence-based research on topics such as the impact of untreated severe mental illness on law enforcement and the criminalization of mental illness.
Dr. Torrey does not mince words as he advances the cause for people with serious mental illness. While some states tout their mental health courts, he says, “Mental health courts exist because the system has failed. If these people were being treated, they wouldn’t end up with misdemeanor charges or felony charges against them in the first place. The very existence of mental health courts is really an indication of the system’s failure.”
Dr. Torrey is frequently quoted in newspapers and is a frequent guest on national radio and television. He has written innumerable guest opinions for national and regional newspapers and magazines.
After I asked Dr. Torrey to write the testimonial for my book, the TAC staff and he went one better. They invited me to his home.
During my flight from Minnesota to Washington, D.C, I read an article from the Washington Post that I had saved for the plane ride. It described in agonizing detail how a son’s schizophrenia had impacted his family. I smiled to myself as I read a pithy quote from Dr. Torrey.
Maryland is “one of the last states you want to be living in,” he said, because it’s one of three states without a law for assisted outpatient treatment. He was once again advocating for people with serious mental illness.
Two staff attorneys from the Treatment Advocacy Center, located in Arlington, Virginia, traveled with me to his home in Bethesda. I felt like pinching myself when we slid into our Uber car. I was really going to visit this genius of a man, my hero for so long.
Lisa Dailey was the senior policy analyst and the other attorney, Sabah Muhammad, a new employee who hadn’t yet met Dr. Torrey. She said she had a brother with schizoaffective disorder, who thought their mother was someone else, so refused to see her. I understood why she was working at TAC.
Strong sunlight backlit a robin-egg sky, making the February day seem warmer than the 40 degrees my phone thermometer showed. As the driver rounded the curved streets of Bethesda, I noticed the houses were all different and not as large as I had expected.
The Torrey home was a medium-sized rambler. “A working class neighborhood that’s been yuppified,” Dr. Torrey said with a smile as he greeted us. He stood about six feet, slighter than I recalled from the NAMI convention twenty years ago, with speckled gray hair and a light beard and mustache. He shook my hand warmly for a long while. I had been forewarned that he suffers from Parkinson’s Disease and noticed his tremor.
He ushered us through the house, which resembled a museum of African artifacts, until we reached a sunny room with comfortable chairs. Dr. Torrey said he and his wife had each worked in Africa before they met and traveled back many times after they married, each time adding art pieces to their home’s beautiful motif. Each wall was colorfully painted in vivid browns, yellow, blues and reds that highlighted the grass hangings, carved masks and animal statues.
Here, Dr. Torrey became Fuller. He was dressed in corduroy pants and a flannel shirt and his comfortable, relaxed demeanor put everyone at ease. He gave each of us his undivided attention when we spoke. He fired questions at us in turn, questions that revealed he had done his homework and cared about our situations. He responded with quick wit. We laughed a lot, even as we discussed serious topics about mental illness. My breath quickened when he said he had read my book and thought it was good. He asked if I agreed with his assessment that Jim’s substance abuse was more a problem than his mental illness. Our nearly two-hour visit sped by. At one point, Fuller’s beautiful wife popped in briefly and joined the conversation. She stood behind her husband’s chair, resting her arms easily around his neck. His smile broadened. I could tell I was witnessing a great love.
Fuller asked Lisa questions about TAC work. “That’s why the Treatment Advocacy Center is so important,” he interjected fervently, almost rising from his chair. “We say what no one else will say. Today the Treatment Advocacy Center is the only organization willing to take on this fight.”
Lisa congratulated him on his upcoming lifetime achievement award from the American Psychiatric Association. She chided him that she still wanted to help write his biography. “There’s so much we don’t know about your life and all the things you’ve done,” she argued.
“I’m 82 and have Parkinson’s. I don’t have time for that,” he shot back with a broad grin. He had mentioned earlier that his work took longer now that he had to dictate. “I want to use the time I have left to harass those who need it.” Gleeful mischief twinkled in his eyes.
Turning to me and the new staff person, Lisa explained sardonically, “His slowing down means he accomplishes 200 times more than the average person in a day instead of 400.”
To prove the point, she asked Fuller what he was doing with the rest of his day. He said he had just finished reading all the NIMH research projects, close to 500. “I only found two on serious mental illness,” he said wryly. “And those aren’t very good. They need to hear from me.”
He transitioned gently to ask the new staff person about her brother, who thought their mother was a stranger. I told her our Jim had thought the same about me and that my book might be educational and of comfort to her family.
Fuller reiterated that he would be sending his testimonial soon. “One strong impression I had after reading it,” he said, looking me directly in the eye and pausing, “You did all you could for your son.”
My eyes stung. Just as I had needed to read his words in Surviving Schizophrenia twenty years ago telling me thatI hadn’t caused Jim’s illness, I needed to hear these words from him now.Words I rarely hear. The physician I have long revered as the clearest, most moral voice on mental illness gave me a consoling benediction to our visit, one that settled in my heart.a